Special Saturday – how do you cope with setbacks

“Somehow though, that anger motivated me to carry on.  I was determined that my son would get the right medical help and the right education …..”

When my son received his diagnosis of an autistic spectrum disorder I never expected setbacks.  After coming to the end of a long journey looking for an explanation for my son’s difficulties I really thought that his diagnosis would help him get the support he needed at school.  How naive I was because not long after, I suddenly came face-to-face with the brutal realities of raising an autistic child.

My son’s diagnostic report had not produced the support that I had hoped for and barely a year later he suddenly became unwell with severe anxiety and agoraphobia which made him a prisoner in his own home.  His ill health seemed to appear suddenly, almost overnight, brought on by a series of very badly handled situations by the school who had little interest in his ASD or how to support him.  It was as if his diagnostic report had just been filed away in a dusty drawer, forgotten and unread. 

I was deeply shocked by my son’s sudden deterioration in his health because not only was he gripped with disabling anxiety and panic attacks but his behaviour worsened as a result.  He withdrew into his own world and struggled to interact with anyone particularly those who visited us at home.  Instead his days were spent lying on the settee transfixed by cartoons on the television.  It took all my effort just to get him engaged in the daily rituals of sleeping, waking and eating such was my son’s withdrawal from those around him. 

My son’s situation was a lot for me to take in.  Not only did I have an ill child which in itself was a massive worry but a child whose health problems had been brought on by an uncaring school.  My emotions veered wildly as a result.  I had moments where I felt incredibly upset for my lost child because he was lost to me, trapped as he was in his own world.  But I also had days where I felt a terrible sense of failure in not getting help for my son earlier enough, though I now realise there wasn’t a lot more I could have done.  If people weren’t prepared to listen to my concerns and respond to them what could I have done?  Except for seeking legal advice (which I couldn’t afford) there wasn’t a lot I felt I could do. 

After the initial shock subsided I then started to feel incredibly angry and betrayed by the appalling behaviour of my son’s school.  Somehow though, that anger motivated me to carry on.  I was determined that my son would get the right medical help and the right education and heaven forbid any professional that tried to stop me.  I knew my child best and from then on I vowed to challenge those that refused to recognise and respond to my son’s disability.  And so began another difficult battle which eventually succeeded in getting the help my son needed and a place at a new school, one that specialises in teaching autistic children.

It took a while for him to adjust to his new school but slowly his behaviour improved and his health settled and we were hopeful for better times.  But then the summer holidays happened and the transition back to school in the autumn of 2011 proved so traumatic that my son’s health deteriorated once again.  His anxiety spiralled out of control and he struggled to leave the house.  Fortunately with prompt psychiatric help we were able to get his symptoms under control quite quickly and prevent the onset of full-blown agoraphobia.  As he started to get better, I then started to expose my son to his school but when I introduced him to lessons, his anxiety returned and he hasn’t been able to return since, not even to look at his school.

Going through this again has been an incredibly worrying time.  Initially I felt overwhelmed and would find myself saying to my husband that I couldn’t go through this again to which he would reply “you have to”.  Of course he was right.  There was never any question of not helping my son but I was exhausted and had still not recovered from my son’s last mental health episode.  The stress of looking after my son had ironically contributed to my own anxiety and insomnia, though nothing in comparison to my son’s difficulties. 

Not many people realise  what it takes to look after a child with mental health problems.  Many assume that anxiety is just a little bit of worry; they don’t realise that severe anxiety and agoraphobia are disabling for the sufferer and when combined with autism is a huge challenge for the carer and parent.  It takes an inordinate amount of patience and gentleness to manage a child with mental health difficulties and a strength to cope with the bad days that invariably happen as you help your child to make progress.  One step forward two steps back is how I describe helping my son. 

Of course the difference with our situation now is that my son does have a statement of special educational needs and he does have a place in a specialist school for autistic children.  We don’t have to fight to prove to the authorities that our son has a disability and a need.  They know.  But still we are on unknown territory yet again.  Where do we go from here?  We have in place home tuition, psychological and psychiatric support and we are now starting to work together to help my son get back to school but the future is uncertain as to whether my son will ever recover enough to be able to manage school. 

Nevertheless, except for the blip where I initially doubted my reserves to carry on, I am a stronger person this time round, much more informed on autism and more experienced coping with my child’s mental health.  But above all I am more able to cope with what I now know is the emotional roller-coaster of caring for a child with special needs.  You see I have to come to accept that setbacks are part of this very unique journey that I am on.

~v~

This post is for Special Saturday, an online ‘global’ campaign that aims to raise awareness of children with special needs.   Every Saturday a prompt is given to encourage people to write or tweet about something in order to help raise awareness of special needs.

If you would like to learn more about Special Saturday then you can do so though the following ways:

Facebook – http://www.facebook.com/SpecialSaturday

Twitter – follow @Specialsat and use the hashtag #specialsaturday

The Blog – http://specialsaturday.org/

Wendy at the Savette Gazette – http://www.savette.com/category/special-saturday/

 

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5 Responses to Special Saturday – how do you cope with setbacks

  1. Audrey says:

    Both my older children have sever Anxiety disorder. We are lucky to have a cognitive therapist who has worked with them and myself. Sometimes I feel nervous leaving the house but because of progress made with the therapist it rarely happens and I can teach my children my coping skills. Love your bog. Beautiful header. Thanks for sharing.

  2. Sally says:

    We raise children with mental health issues and I see much in common in our situations. Sometimes I feel as though I have been repeatedly punched, but as you have written, you have to shake yourself down and get on with it.
    Thanks for writing with such honesty and for raising my attention to Special Saturday.

  3. Julie says:

    My son has been registered disabled since nealy 2 years old, he is now 9. I get DLA and now Direct Payments. I must say coping has been hard over the years, as I have had to manage it all as was a single parent for a long time, no-one takes that strain off you and manages it for you, and at times it felt I was climbing a hill in which I never got to the top.
    The pressure of dealing with his extensive professional team over the years has been difficult as after every varied doctors appointment, SLT, school review, support systems etc, I feel drained after it talking, repeating and going over the needs he has. I would always do everything in my power for his better wellbeing, but people need to understand although we may look like we take it in our stride, it is far from that some days!

  4. Pingback: how to cope with set backs from Aspie in the family « SPECIAL SATURDAY

  5. Beth says:

    Thank you for sharing this Deb ( and Happy New Year Too!) Your words are always inspirational to me and I can so relate to anger being such a motivator. It may not be instant, but after the initial fuming has simmered down to a gentle bubbling … it is then that I find my inspiration to carry on and fight. A friend once said to me years ago a saying I often hear in my head…. ‘ you can either get bitter, or get better’ _ I’d like to think I get better- better at understanding ASD,better at supporting my son, better at having the confidence to fight and better at realising I am an expert on my own child and no-one can beat that. It is anger that has motivated me to , like yourself, find my son a better school ( not a single night terror or after school meltdown since he started… it is early days but such a change in him is so heart warming) and to fund a private assessment of my son , to help to provide some ammunition for those professionals hell bent on putting the purse strings before the actual needs of a child first, or who think seeing a child for an hour is enough to make judgements about his strengths , challenges and future education. I wish you , your son and your family a very positive 2012 with as few setbacks as possible. Beth x

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